Hi, Just wondering if anyones experienced what I am and have any advice please. Firstly so you're aware I have bulbar onset and have totally lost speech and swallow, but I and still lucky that I am mobile although weaker than I used to be.
Basically during the day I feel fine as long as I don’t rush about and get out of breath and never really dose during the day and evening but once I go to bed I sleep quite heavily and struggle to wake up during night to go to toilet and then in the morning it takes over an hour to wake up very slowly laying in bed! I can’t hardly keep my eyes open or move about at all, its as if my brain has stopped working and I almost feel like I’m dying. My thoughts are that I’m loosing oxygen intake but it's been suggested by a doctor it might be my diaphragm muscles are getting weaker and oxygen support overnight won’t help? As they say everyone with MND is different but I was just wondering if someone else has had these sort of problems and possibly what the solutions if any were?
Basically during the day I feel fine as long as I don’t rush about and get out of breath and never really dose during the day and evening but once I go to bed I sleep quite heavily and struggle to wake up during night to go to toilet and then in the morning it takes over an hour to wake up very slowly laying in bed! I can’t hardly keep my eyes open or move about at all, its as if my brain has stopped working and I almost feel like I’m dying. My thoughts are that I’m loosing oxygen intake but it's been suggested by a doctor it might be my diaphragm muscles are getting weaker and oxygen support overnight won’t help? As they say everyone with MND is different but I was just wondering if someone else has had these sort of problems and possibly what the solutions if any were?
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